Vasculitis UK
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Leg pain

My 31 year old son is suffering with horrendous pain in both legs in his calves, he has struggled on with this for over twelve months but now he is in that much pain he can hardly walk. He has actually been crying with the pain and is frustrated that the Drs seem to be doing nothing other than feed him painkillers. Although he takes the painkillers they are doing no good, sometimes they just take the edge of it, but he wants to know what is causes the pain and the Drs are doing nothing. I told him to request a Doppler which he did and they said no and have just sent him for yet again more blood tests. Could anybody shine any light on this for us please, we are really desperate now?

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Is this the GPs or has he been referred to a specialist of any sort?

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It is his Gp they have not referred him to anyone just keep upping the strength of tramadol a normal one and a slow release one ☹️

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He has asked over and over to be referred to somewhere else because he can't cope with this pain much longer and they just won't do it ☹️

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Tell him to go to a and e and the pain has got worse then they will do loads of tea s. GPS r crap for anything serious

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Tests not teas

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If it were me/mine, I would go to the GP with him while he tells them he wishes to have a referral to either a vascular surgeon or a neurologist for a start (can't think who is really best) or if not that, the Pain Clinic. I might also copy in the Practice Manager to the situation.

It is totally irresponsible to dish out potentially addictive medication and not look for the CAUSE of the pain. It really is amazing how much having a witness changes their attitude. It is usually women who suffer this - in a sense it is a relief to know men do too.

Are you in the UK? I would also seriously consider a visit to A&E - it is chronic so is the GP's field really but if they are doing nothing...

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He is really at such a low point at the min, he went to A&E about 12 months ago and they advised him to go and pay for a massage. They just took blood, no scans or anything. His GP about 9 months ago sent him for blood tests and said apparently that his vitiman D was low and that would be causing the pain in his legs so gave him a 6 month course of tablets. Is vitiman D levels are fine now but the pain has got worse. He is very shy and finds it extremely difficult to put his foot down as such and obviously feels he is just being fobbed off as you can see why he wld feel this way. It is hard for me to go with him as I am housebound but I have said if nothing is done after the results of these blood tests I will get there with him somehow 😡

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Oh the A&E dr gave him a name of a good osteopath for him to go to who was a very good friend of his and would give him a good massage which would help but did not refer him to an Osteopath at the hospital

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Ps - forgot to say, you won't find any osteopaths in the NHS I'm afraid. Strictly complementary. Here in mainland Europe you can get some of the treatments from orthopaedic doctors and physiotherapist - the UK pooh-poohs the benefits.

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Pffft - my husband's vit D was 7 (can't get much lower than that) and he didn't have any problems except raised BP which has gone down since the vit D was sorted. They need reminding of that - in an email if no other way and suggesting you may take it further.

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Thank you Pro for your good advice, I told him that I thought the low vitiman d cause was a load of rubbish. As I said he suffers from really bad shyness so finds it really difficult to speak on a one to one, so I know he wld never have the confidence to question them, I really wish he could 😢

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All I can really do is wish you all the best.

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Thank you so much for all your help, I am going to try my best to get there with him next time, saying that though his next appointment is a telephone consultation to discuss the results of these blood tests so will have to see what is said. I just feel so useless as a Mum seeing him in so much pain and cannot help him even though he is 31 he is still my child etc and with him suffering acute Shyness I know he struggles putting his foot down with the Drs etc xx xx

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Hi Tattylashes,

Is there a reason that you posted this question in the Vasculitis UK forum, do you think your son has Vasculitis?

You mention blood tests, have they checked your son's Inflamatory markers ( ESR, CRP ) and B 12 levels? Does he have any swelling/ rashes etc? Any other symptoms apart from pain? Does he have any underlying medical conditions?

Have they ever given him any diagnosis?

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Hi, no I posted here by mistake to be honest, he has ITP and Wolfe Parkinson White Syndrome which are both under control at the min. Yes his calves do really swell and go rock hard. He is carrying excess weight, he has been overweight all his life from the day he was born (a 12lb baby) he has never been tested for his thyroids. He has not had any diagnosis they just keep upping the strength of the Tramadol 😡 etc

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Hello. I am not normally on this forum, but like to 'look in', when something familiar catches my eye. 10 years ago, I had pain in my calves, as you describe. Claudication it was. Referred to vascular surgeon, who was extremely thorough and a wonderful man. I had extensive testing, including angiogram and angioplasty. In the end, I had to have surgery. I must add that I had other leg probs, at same time,so maybe this won't all be necessary for your son, but Tramadol/other doesn't help. Expert needed.

I wish you and your son well and soon.

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INSIST THAT YOUR SON SEES A RHEUMATOLOGIST NOW. It's really important. My Vasculitis was diagnosed after I presented with just such pain. Low vitamin D was also present. I could not walk more than 300 yards without having to stop a rest my legs - severe pain in calf muscles, like cramp. It is because the blood pathways are so compromised through inflammation that hardly any blood is getting through to the muscle. Your son needs to have blood pathways to the legs looked at - an angiogram is what I had, going in through the artery in the groin. My main blood pathways had closed, and the body was generating smaller pathways to carry some blood to the muscles, which was the only reason I was able to walk at all.

Treatment was intravenous high dose of steroids, which worked like magic for joint pain initial pain, then two weekly infusions for 6-8 weeks of steroids and cyclophosphamide, after this, weekly self injections of methotrexate, for another six months, then methotrexate by mouth and steroids, reducing steroid dosage to nil 2 years ago, after 4-5 years. Still on methotrexate 15mg once a week.

By the way, I had one test that showed coeliac disease (but no others, so inconclusive) and I have stayed off wheat, barley and rye ever since. Might have been the reason for vitamin D deficiency,, and trigger for the condition. Vasculitis type Polyarteritis Nodosa, or "PAN".

My rheumatologist is Dr. Sultan, based at Airedale Hospital in Steeton, near Keighley, West Yorkshire. She is very good and keeps herself abreast of new developments. Just in case you should need to put your doctor in touch with someone who knows about this.

I was 55 when this started - your son is obviously much younger, and might make an even better recovery than me, but I can walk five miles or so now, although I am slow going up hill (blood supply still compromised) but most things I want to do are possible. Be insistent and get you son help now. Best of luck to you.

Janet

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Hi Janet and TattyLashes I have churg Strauss syndrome and was rushed into hospital with incredible pain in my back that had got worse over a few weeks. I was referred for a scan & when I stood up I collapsed. The cause was Vasculitis that cut off the blood supply to my legs & resulted in drop foot due to nerve damage. My nerves have grown back eventually although not perfectly & I can walk again. I don’t want to scare you but it is worth trying to get your son to see a rheumatologist just to check it out. I was about 48 at the time. Best of luck. You could ask your GP to refer your son for a scan. It was blood tests that confirmed my diagnosis.

Like you Janet I am under the care of dr sultan at Airedale Hospital. I received similar treatment to you but I take aziathioprine. I also used to work at Airedale hospital so it’s good to hear someone praise their rheumatology team.

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Hi Katie, just wanted to say Hi and glad to hear you have regained the ability to walk and that nerves have grown back a bit. My care has been excellent at Airedale, and I'm really grateful for the help that I was given and the kind care in hospital over those first few days of treatment. Recovery has been slow and steady, over several years. I do have to repeat though, that I think staying off gluten has helped. I was suspicious that I had a reaction to wheat before that positive blood test (never repeated) but had not taken any steps to exclude wheat from my diet. Having said all that, recovery was not complete, and like you, I have residual damage. When I walk several miles my feet ache unbearably and I have to stop and massage them a bit to get the blood circulating again. Toes go numb too. Otherwise my legs would now allow me to walk further. Best of luck to you too, and hope you get further recovery. Janet

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Hi Janet yes you do need patience with these Vasculitis diseases as recovery is slow. I’ve found it hard to accept I’ll be on lots of medication for life & still have many medical appointments as I see a Vasculitis specialist in Manchester too, plus respiratory, mobility & endocrinology & rheumatology at Airedale. It’s interesting what you say about gluten tolerance I’ll look into that. I find alternative therapies such as accupuncture, reflexology & shiatsu massage all Help with nerve pain. Hope your good care continues at Airedale best wishes to you.

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Hi Janet, we did see a Rheumatologist about 12 months ago and I did go with him, all he done was draw markers on his back and had him lean backwards and forwards and from that came to the conclusion that it was not rheumatism etc, I asked cld he not refer him for a scan and he said that the department could not afford to just send people for random scans that they had a budget to adhere to, God it makes me so angry and can fully understand why he has lost hope of anyone ever listening to or helping him 😢

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My son had leg pain and ankle pain and hobbled around like an old man. We did see a rheumatologist and a dermatologist. They were doing testing so they didn't really give him anything. If it didn't clear up, they were going to give him prednisone. I think it is the fact that the leg vessels are inflamed that causes the pain and the difficulty walking but I do not know for sure.

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Hi 5marcy5, prednisone (trade name "prednisolone") was what I was given, and weaned myself off it after five years. The first large dose, given intravenously, gave me what felt like magical relief from the joint pain which had been stopping me from sleeping as well as giving me pain during the day. If your son's inflammation markers are up in the blood tests this is the one that makes them sit up and take notice, so I would ask for those tests, as Keyes recommended above.

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Prednisone and prednisolone are not alternative names for the same thing, they are two different substances. Prednisolone is the active substance and prednisone must be metabolised in the liver to form prednisolone.

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Hi Janet what are the tests he should ask for please?

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See reply from Keyes further above in this thread. "have they checked your son's Inflamatory markers ( ESR, CRP ) and B 12 levels?" I certainly remember "CRP" as a test that is on my blood form.

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Hi I have searched above and cannot find anything from Keyes for some reason. I have just said to my Son that I want him to ring the Drs on Monday because his results should be well back and he is not going to wait ten days like the dr said and if the results are back I want him to make an appointment so that I can go in with him (not a telephone consultation as the gp suggested and booked for a week Monday because she is retired now and only works Mondays) now I have a bit of knowledge from you lovely people, I can ask about vasculitis etc and find out what blood tests have been done and ask for a print out of the results

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Reply found it thanks. Do you have any tips as to anything that would help with the pain etc, should he stay off his legs or keep moving as much as possible, would raising his legs help etc

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Hello PMRpro, thank you for that explanation - so are some people more able to metabolise Prednisone than others? I'm just wondering why I was given Prednisolone (The trade name was actually Dilacort) and not Prednisone.

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Depends what country you are in quite often - the UK generally uses prednisolone or methyl prednisolone for injections/infusions. The USA usually uses prednisone for the oral route. Dilacort is the gastroresistant variety - coated so they pass through the stomach and are absorbed further down the gut, reducing gastric irritation. They are only found in the UK as far as I know.

The bioavailbility (the amount you absorb from the stomach/gut) varies from 50 to 90%. So yes, some people get a lot more than others even before the body deals with it.

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He was prescribed Prednisolene when his platelets had dropped to zero due to ITP and he had a really bad reaction to them, he shook from head to toe, could not sleep, felt like his head was racing all of the time, he really wasn't in a good way at all

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Tattylashes - did they not do a blood test for inflammation markers? This blood test would show if there was an issue, and I'm surprised the consultant was looking at his back, when it's the legs that give pain. I would ask for a second opinion, but ask your GP to get the blood test done first.

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Mmm, so sounds like they've already identified raised inflammation markers, prescribed the usual steroids, but found he doesn't tolerate them well. There must be an alternative, surely. I don't know, I don't have medical knowledge, just sympathetic because he's a young man to be suffering this condition, and would hope the NHS would have some answers for him. It was certainly the steroid infusion that really made the initial difference for me.

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Hi janet, no he was on steroids for something completely different although I do feel that they cld be related in some way, he was on the steroids years ago as he has ITP which has gone into remission three times then seems to raise it's ugly head about every ten years, stronger each time. He did not take well to the steroids at all 🤢

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Well, although the steroids always seem to be part of the solution, they're not the whole picture. I just think you need a diagnosis at this point. It sounds like your son has a complicated combination of conditions, but they need sorting out, and it does take some persistence not to let doctors fob you off with pain killers. I really hope your son can get the energy together to try to get a proper diagnosis, because those leg symptoms sound very familiar to me. All the very best, Janet

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We are still no better off well worse in fact, when he went for his appt with the GP one he had never seen before and he explained how bad they are and that he felt like the tablets had not been good. They had increased well doubled his anti depressant and they reacted with the Tramadol, he felt ill, shakeup, had blurred vision and felt that confused that he cld not do his job properly (still in agony with the leg pain).

He told the dr everything and how bad the pain in his legs was and he said all his blood tests had come back clear, told him to go back to his original dose of antidepressant but still take the Tramadol and he wld be ok. Then gave him a sick note for work for two weeks, he wrote on the sick note "Stress related illness" and made him an appt to go back and see him in two weeks time, which will now be next Monday.

I am so frustrated seeing him in so much pain and cannot do anything to help him, he has health issues in the past but nothing as awful as this and half of the frustration with him is not knowing what is causing it and the way he is just getting fobbed off by every different dr he sees 😡 I could really cry for him. I know he is 31 but a number does not matter your child is always your child no matter what age and you always want to do your best for them, especially with regard to their health.

Also it is now stressing him having time off work because I have said before he will not stay off work because they are under so much pressure now with having sick leave etc and is scared of losing his job, but what can he do if it's not one thing it's another, he has had no choice in the matter this time because things have got that bad ☹️ Xx xx

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Hi. Sounds awfully familiar to me and exactly like the first symptoms I had for months before I was diagnosed with MPA. Started with pain in my feet which GP said was plantar fasciitis. That never went away but then started getting random pain in joints like elbows, shoulders etc. That would last for a couple of days then go away. Was referred to rheumatologist who did the blood tests which showed nothing. He decided it was sero-negative rheumatoid arthritis as it didn’t show in blood tests. I didn’t think this was correct and felt a bit fobbed off truth be told. Pain developed into pain in calves which felt like severe cramp whether I’d been on my feet or not. Most days it was so bad that one of my coworkers either gave me a piggy back or collected my car for me as I couldn’t walk to the car park. Finally and only after calling out the Dr to my home as I could barely get out of bed he sent me for blood tests for pretty much everything. Hours later I find myself admitted to the Renal unit with 6% kidney function and a vasculitis diagnosis. Have to say since then, the treatment I’ve had has been amazing. Unfortunately, the diagnosis took so long the damage to my kidneys is irreversible and am now on the transplant path. Vasculitis is in remission though.....woohoo!

Has vasculitis been discussed with your GP? I know it was never even mentioned in all the time I was visiting my GP and even a rheumatologist. It got to the point with me where I was wondering if I was even Ill as nobody could tell me what was wrong. Even hearing that my kidneys were so damaged was almost a relief so I finally knew what was wrong with me.

I feel for you, I really do. There is light at the end of the tunnel if you can just get that diagnosis.

Keep strong.

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I understand exactly hun he has said is it bad actually wanting your go to tell you something is wrong, at least then you cld deal with the situation and get on with it.

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